The latest episode of the ERNs on Air bonus podcast series shines a spotlight on a patient-led initiative addressing inequities in endocrine medicine provision across Europe.
In this episode, host Julien Poulain hands over to Nora Lázaro (EURORDIS, ERN & Healthcare Patient Engagement Manager) for a conversation with Johan de Graaf (patient representative and co-chair of the Endo-ERN ePAG) and Emily White (Project Manager, Endo-ERN Coordination Team).
Together, they discuss how data from three Europe-wide surveys has been used to map disparities in access to essential treatments and specialist care for rare [...]
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It is with great sadness that we share the news of the passing of Prof. Juliane Léger on 27 September 2025, at the age of 71.
Prof. Léger was a distinguished pediatric endocrinologist-diabetologist at Hôpital Robert-Debré (AP-HP, Paris) and an important contributor to the foundation of Endo-ERN.
Throughout her career, she made outstanding contributions to the field of pediatric endocrinology, particularly in the areas of congenital hypothyroidism, growth disorders, and rare endocrine diseases. As coordinator of the French reference centre CRESCENDO, she played a leading role in advancing care, research, and collaboration for children with rare endocrine conditions.
Prof. [...]
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We kindly invite you to complete a short survey developed by ERDERA Work Package 25 – Task 4, which aims to gather insights into the current state of clinical research across the European Reference Networks (ERNs) and the involvement of ERN-affiliated Health Care Providers (HCPs) in the ERDERA project.
This survey supports the further development of the ERN Living Lab, an ERN research platform designed to foster cross-fertilization between researchers and clinical experts.
🔗 Survey link: https://forms.office.com/e/ZJYVAnA7mi
📄 Survey preview: You will find an example of the survey with all questions for [...]
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Reigster now for the 2nd International Conference on Clinical Research Networks for Rare Diseases, organised by IRDiRC, ERDERA, and Rare Diseases International. This event will take place 9–10 December 2025 in Heidelberg, Germany — with both in-person and virtual participation options.
Clinical Research Networks (CRNs) form the backbone of efficient and collaborative rare disease research. By linking sites, laboratories, patient organisations, funders, and regulators, they help overcome geographic fragmentation, pool limited patient populations, and harmonise data and protocols across borders.
This conference, titled Mobilising the Global Rare Disease Clinical Research Ecosystem [...]
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We are pleased to inform you that registration is now open for the JARDIN General Assembly 2025. The annual meeting of the JARDIN will take place at the at the Vilnius Park Plaza Hotel (located at: M. K. Čiurlionio 84, LT-03100 Vilnius, Lithuania) and online from 7-10 October.
The JARDIN General Assembly is a crucial opportunity for JARDIN participants to review the progress of the JARDIN Work Packages, address questions about the project, discuss plans for future activities, meet and network.
If you wish to attend, please register via the [...]
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This event will be conducted in Italian.
Serie di Webinars SIE-SIEDP sulle malattie endocrine rare per specialisti italiani (Joint SIE-SIEDP webinars in rare endocrine diseases: a collaboration for Italian specialists)
Moderatori: M. Maghnie, L. Persani
Speakers: B. Cangiano (Endocrinologia, Milano; ipopituitarismo acquisito), D. Vitali (Associazione pazienti) Pediatra Tommaso Aversa Messina (focus su deficit di GH)
L’evento si terrà in italiano. Se non potete partecipare, registratevi comunque e riceverete una registrazione.
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This event will be conducted in Italian.
Webinars SIE-SIEDP sulle malattie endocrine rare: una serie di webinars rivolti agli specialisti italiani (Joint SIE-SIEDP webinars on rare endocrine diseases: a collaboration for the Italian specialists).
Moderatori: Salvo Cannavò e MariaCarolina Salerno
Speakers: D. Capalbo (Pediatria Napoli), A. Gambineri (Endocrinologia, Bologna), G Del Maso (Associazione pazienti)
L’evento si terrà in italiano. Se non potete partecipare, registratevi comunque e riceverete una registrazione.
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The CPMS Helpdesk is a resource to support all CPMS users with any technical issues that they have using the CPMS 2.0 system or app, ensuring clinicians are able to participate in virtual consultations. You can now even schedule a 1/1 session to receive personalized support.
Greta Ginski is the CPMS Helpdesk Manager and has been troubleshooting issues from Lubeck since June of 2024. She took the time to share her experiences and offer helpful tips for new CPMS users. She took the time to share her experiences and offer helpful tips for new CPMS users.
FAQ
The most [...]
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Are you living with or caring for someone affected by adrenocortical carcinoma (ACC)?
Join us for Living with ACC: Care, Support, and What’s Ahead, an engaging and informative online forum hosted by the European Society of Endocrinology (ESE) on Saturday, 4 October, 10:00-13:00 CEST.
What’s on the programme?
Session 1 kicks off with expert-led talks:
Dr. Rossella Libe (France) will cover ACC basics and current standard treatments.
Dr. Barbara Altieri (Italy) will discuss mitotane’s effectiveness and how to manage its side effects.
Guido Frisiani [...]
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Endo-ERN endorsed this upcoming meeting being hosted at the Meyer Health Campus Wednesday, 17 September, 2025.
Morning Sessions (9:30 AM – 12:45 PM)
Welcome, introduction, and objectives with Barbara Piccini
Updates on Type 1 Diabetes Screening (Sonia Toni) and Immunotherapy (Dario Iafusco)
Advances in Automated Insulin Delivery Systems and managing physical activity (Emioli Randazzo)
Insights on Supplements, Probiotics, and Nutraceuticals in Diabetes (Cristina Soci & Maria Rosaria Matera)
Clinical considerations for Transaminase Elevation in Pediatric Diabetology and the hepatologist’s role (Giuseppe Indolfi)
Networking over a light [...]
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